CAR-T next week: Hi all I know it’s been way too... - CLL Support

CLL Support

16,137 members26,101 posts

CAR-T next week

DebinOzinLondon
DebinOzinLondon

Hi all

I know it’s been way too long between updates but, after 4 wonderful years on venetoclax, I had to come off that drug in December with significant resistance developing. I knew there was a CAR-T trial for CLL opening for those with stable disease on ibrutinib so switched to that and was able to screen for the trial after 6 months with that falling in June. I passed screening, had my tcells harvested in July and have just finished 3 days of lymphodepleting Chemo (F + C). The t-cells were manufactured in the US and returned to Australia this week and my day 0 is Tuesday. Have reactivated my blog for anyone who wants to follow this latest adventure! That’s abtandme.com

Best wishes

Deborah

37 Replies
oldestnewest

Good luck........keeping everything crossed for you!

Deborah,

I have just looked at your blog and what a journey you have been on, health and air miles wise ! Wishing you all the best for your next treatment.

With love from London

Colette

DebinOzinLondon,

Wishing you all the best in this next part of your journey💞

Elkk au

Hidden
Hidden

Just read your blog and what a journey. I shall follow with interest. I'm starting treatment soon, just don't know yet what my options are. CAR-T does seem incredible so we will all be keeping our fingers (and toes) crossed for you. Good luck.

I wish you good luck. 🤞

Ann

Deborah,

Thanks for the update. I will go back to following your blog. Wishing you all the very best of luck moving forward.

Hugs!!

Nan

Newdawn
NewdawnAdministrator

As your blog header says Deb, ‘If at first you don’t succeed, trial, trial and trial again!’

I’ve followed your mammoth journey across the world from the beginning (we were both much younger then) 😉 and being on Venetoclax myself now, I’ve been awaiting your update so thanks for this.

You’ve always been a brilliant advocate for yourself and others which has benefitted so many.

Wishing you immense success in your next trial and I’m so relieved we now have these ground breaking opportunities.

Huge best wishes and please keep us updated.

Newdawn from England

You are an amazing lady.

I wish you all the best, and will be sending positive thoughts to to you and your family over the next few weeks

Good Luck

Pat

Deb,

I had a feeling that this day was coming. Your last post indicated it so but I wasn’t sure what you would decide on.

It’s been a crazy ride for you and a successful one for sure considering how aggressive your disease was/is.

Love and prayers to you and your family through this. I will follow along closely.

Jeff

I can't wait to read about how very successful this is for you!!!!

What an adventure. You have had so many challenges, here's to this one being reasonable and trouble free!

I just want to wish great success with Your treatment. You had some bumpy journey and deserve a break Deb. Are you still in London or back in Melbourne?

Keeping my fingers 🤞🏻

Dana

Good luck! Very best wishes.

Just last week in a quiet moment, gee they are all quiet moments now really, I was wondering how you were getting along. The special lady who took us on her brave journey, not to mention all those miles flying.

Deb, I join all the companions here in wishing you the success you deserve.

From my little corner of Wales.

Cyber hug

Bub (Bubnojay)

Wishing you all the best Deb. Update us please when you can.

Sue

lankisterguy
lankisterguyVolunteer

Hi DebinOzinLondon,

-

Welcome back, so glad to hear from you.

-

Sorry to hear that Ibrutinib punked out quickly for you.

-

We all look forward to your wonderfully written updates.

-

How are your kids doing through all this?

-

Len

bkoffman
bkoffmanCLL CURE Hero

Thinking of you.

Have followed your journey with great admiration . Thanks Deb for your altruistic pioneering spirit , you are great.

All the best

Best of luck and the only way is up ❤️

I do so hope that all goes well for you. Xx

Wishing you well DebinOzinLondon. You're an inspiration to us all

Good luck Deborah going forward. I was fortunate too, as I was able to get on Vneetoclax 3 years ago and have had normal bloods ever since. I'm 81 and feel well and continue on V, so your new journey is of great interest to me. Thank you so much for all you have posted over the years.

David. UK

Hi Deborah, my partner is about to have CAR-T cell treatment on 6th October. Like yourself, he's had a very bumpy journey from first diagnoses. The longest he's been in remission is 2years and it was getting less and less after each course of tratment. I would love to know how are you getting on with it. We first heard about it a few years ago and were nervous as the success rate was low. Having read more updated information on the treatment I know understand that the success is now a lot higher, and the side-effects have been tweaked so that they are less. He doesn't have CLL but he has NHL - Mantel Cell Lymphomia. At the moment he is have lots of preliminary treatment to get him ready for the start. His cells have been harvested in the US and sent to France, where we live. We know it's going to be a long hard slog and he'll be in hospital for at least 4/5 weeks all going according to plan and the recovery is going to take at least 6 months to a year. I will follow your blog and suggest that my partner takes a look at it as well. It will help him knowing that somebody is also going through the same procedure. There is also an interesting book I have brought for him by a guy called David Downs called A Mild Touch of the ManFlu/Cancer. He who also went through the procedure. The author had undergone CAR-T therapy and come out the other end, and it's a light-hearted look on a very serious subject. This is my partners reading while in hospital! Good luck with your treatment, and I look forward to reading the updates. Stay Safe! xx

Wishing you all the best. Mags

Hello DebinOzinLondon

And an adventure it will be. Blessings going forward.

Best wishes for a successful outcome and optimal health!

Wishing you an easy go of it and a speedy and complete recovery. Glad that you won't have to be flying anywhere for treatment this time.

Ellen,

I was just thinking about how the only lady who has traveled more than you is Deb.

Good health to both of you

Jeff

Deb wins the travel award 10x over. She is my hero. :)

I followed your experience from day 1 and had hoped that would do the job. I wish the best outcome for you!

You Are Number One Deb!

Wishing much strength, love and success with this venture

Thank You for opening the door, and holding it open.

JM

Best wishes for you and your family 🙏

Wishing you all the best and thanks for posting 💪💪

Take care Deborah. Wishing you positive results. I have never heard about your blog, but will be following you from now on.

Hello Debs, I am following your progress keenly and am so pleased everything is going well. If you are able, I wonder if I could ask you a question. My partner is seeing his Consultant to get the low-down on the start of his CAR-T cell treatment in October. I just wanted to know what questions he should be asking his Consultant? If I leave it to him, he wouldn't ask anything at all!! What are the things we really need to know? Any help you can give will be most appreciated. Take care, x

Yes I’d ask:

1. Which CAR-T is he having and what’s the protocol with it - how long would he stay in hospital

2. If it’s in a trial what’s your side of the bargain - how many CTs, bone marrows, when and for how long

3. What is the time between harvesting, manufacture and reinfusion and what will happen if his disease progresses between harvesting and infusion

4. What is the lymphodepleting chemotherapy they’ll use

5. I know you’re in France - how many have they done at the hospital and what are their survival statistics

6. If it’s a trial what stage is it - is it dose escalating and if so what dose would he get? How many others in the world have had that dose

7. If he chooses not to go ahead with CAR-T what would the alternative treatment be

8. How have other MCL patients gone with CAR-T globally and would it be a bridge to an allogeneic transplant or could it replace the need for this for him

9. What drugs will he be on both before and after

10. What specialist teams will be involved in his care - I have 13! Most important other than my haematology team at the moment seems to be the neuropsych team and the infectious disease consultant as they’re trying to stop me getting a fungal infection which can happen with ibrutinib and CAR-T apparently

11. What should he do to help things go smoothly

Hope that helps! Brian Koffman May have more.

Night of day 5 and I’m still feeling a bit cold but nothing more than that at the moment.

Cheers

Deb

Wishing you the best possible outcome!!! You got this!!!💪🏼💪🏼💪🏼

Best,

Sandy

You may also like...